Philanthropy’s Leader in the Fight Against Lyme Disease Launches a Dedicated Treatment Center

It’s springtime, summer is around the corner, and folks everywhere can’t wait to get outside. Unfortunately, outside is where ticks live.

Back in 2019, we spoke to people at the Steven and Alexandra Cohen Foundation about their work to combat Lyme and other tick-borne diseases. Ticks are objectively gross enough on their own, but the diseases they spread are the real danger. They’re among the fastest-growing infectious diseases in the country. Latest CDC estimates count about 476,000 cases a year, up considerably from their previous estimate of 329,000.

While most people are cured by the current standard antibiotic treatment, an estimated 10 to 20% of Lyme patients fail to get better and go on to develop chronic and potentially debilitating symptoms that can last for months or years. That’s where the serious concern lies.

The challenges facing Lyme patients are multifaceted. There’s a lack of Lyme literacy among doctors—it’s a cagey disease that imitates other common conditions. The existing treatments are far from perfect, even when a patient is correctly diagnosed. And there’s a lack of dependable diagnostic methods to determine who is actually sick and with which specific tick-borne disease. Add to the mix a dearth of public and private funding for solutions to all of the above.

The Cohen Foundation, spurred on by Alexandra’s firsthand experience with chronic Lyme, had become the largest private funder of tick-borne disease causes in the country, and likely the world, giving out around $60 million over the last five years. One of the major initiatives they discussed with us back in 2019 was their vision to establish a truly Lyme-focused treatment center in the New York City area—the Northeast is one area of heavy Lyme infection. They put out the call for proposals for a “clinical center of excellence” that would advance knowledge of the disease while caring for chronic sufferers who might otherwise have little hope of finding effective treatment. Like so many other things, the process was delayed by the pandemic.

Recently, their vision of a dedicated clinical center finally took shape. The Cohen Foundation announced a $16 million gift to Columbia University to create the Cohen Center for Health and Recovery from Tick-Borne Diseases. The center will provide access to physicians experienced with these diseases, and affordable care—such access is a bigger problem than you might expect. With a hard-to-diagnose disease that can present with different symptoms in different people, a comprehensive medical evaluation is a long process. Those with chronic symptoms may need to see doctors frequently, driving costs to prohibitive levels. And of course, not so many doctors are experienced at spotting Lyme or caring for people with chronic cases.

The Cohen Foundation gift will also fund a national clinical trials network that will aim to identify better evidence-based treatments for patients with Lyme and other tick-borne diseases. Along the way, they’ll work to integrate research and physician training. It’s expected to start seeing patients this summer.

“The center has a scientific review committee that’s open to proposals from other researchers,” said Bennett Nemser, senior program officer at the Cohen Foundation. “The idea is to build a wider network around the country, to generate evidence and bring new treatments further down the pipeline.”

Elsewhere in private and public funding, support for Lyme and tick-borne illnesses has grown modestly in recent years, Nemser said. The federal government provides the majority of funding for tick-borne disease research—about $30 million per year—but that hasn’t been sufficient to make serious headway. It’s a problem today that is likely to develop into a much bigger problem in future.

Biologists have discovered significantly increased rates of Lyme infection in the tick population, leading to the development of Lyme hotspots around the country. Currently, the greatest concentrations of ticks are in the Northeast and the upper Midwest. But those of us outside those areas aren’t free from danger. Researchers have found that the warming climate is supporting tick population spread, ticks are migrating, and people are spending more time outdoors. All of this points to a heavier burden of Lyme and tick-borne conditions in future, and a need for even more funding for care and research into medical solutions.

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